Parenting developmentally disabled children will always be a special challenge. It need not be a nightmare. In addition to meeting the usual parenting challenges, parents of disabled children face a gauntlet of added obstacles that can try the resolve and resources of even the strongest families. But navigating the complex
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Wednesday, June 27, 2007

In my book, I talked about my struggle to communicate with Billy Ray. I was doing everything recommended by the various professionals and nothing was working. Here is a brief excerpt from that chapter:

“I was taking pictures of each step in an activity and writing text about each step. Some activities took more than one page. The consultant assisting us at the time would say, “You will lose his interest if they are too long.” So I shortened them and tried to “do it right,” but discovered he only responded to my detailed visuals that contained real pictures. Again, you must adapt to your child’s needs and responses, not someone else’s ideas.

Billy Ray may be more complicated than some of your children because he experiences medical issues combined with multiple special needs issues. However, I think the principle of today’s post applies to most children and adults who experience special needs. We, as parents, generally don’t have the luxury of continuing to do things for our children because it is the way we have always done things or because of some established program.

It has been necessary to write addendums to the Long Term Vision and Care Plan through our county case manager for the coming year’s funding for in-home supports. As I wrote it, it occurred to me that I am the one changing more than Billy Ray here. Adapting is not a once and for all times thing, at least for my son. Here is a cut and paste to the addendum for the care plan:

“If his mother, and primary caregiver, remains very aware of potential pain, intestinal issues (bowel regularity), changes in blood sugar, assuring that conditions in his environment are not such as to agitate him, etc., etc. Billy Ray is able to function with less of the extreme agitation (physical aggression and property damage) that he was experiencing in the last writing (11/6/06). However, it should be noted that his tolerance for pain, routine and environmental concerns has actually decreased. Mom must be on guard at ALL times to assure that these matters are addressed BEFORE they go into severe agitation or a meltdown. This balancing act requires constant vigilance on the part of the family.

“Community activities are more of a challenge presently. On the one hand, Billy Ray wants to go. On the other hand, he is experiencing a substantial reduction in energy level so major flexibility must be allowed so that he can go out when he is able. This makes scheduling regular activities much more difficult. The only vocational activity he continues to participate in is his Meals on Wheels delivery. He is able to maintain that route which he loves because his stepfather does it alone when Billy Ray is not able to participate. Billy Ray still participates probably 3 out of 4 weeks but it exhausts him sometimes for several days. He continues to do restaurant meals and trips in the car as he is able because these can be done without as much scheduling.”

Whether it is because of physical changes, development or other issues a child is experiencing the need to adapt and readapt is a sure thing.

We are adapting in another way too. We have frequently talked about Billy Ray’s skin issues. (See here on this blog and here on my website for more details on our skin care regime. ) Until recently they were not on his face. He has a heavy beard and shaving is at times a struggle. We talked with the pediatricians years ago about whether growing a beard might be a good answer. That recommendation was that we not do that for sanitary reasons. However, Billy Ray is now getting lesions on his chin and while he doesn’t get lesions under his chin, his neck is gets irritated very easily from the shaving. After discussion with his present PCP, Brice Stanley, we decided to grow a beard because shaving may be causing more problems than it cures.

However, following the advice of our then pediatrician we taught started shaving pretty early. She suggested that we make it fun by having family who would normally give Christmas and birthday presents (his birthday is near Christmas) give him various types of after-shave and supplies for shaving. That way we could find his preference. It worked. He loves Brut and uses it for after-shave and deordorant. Shaving is a part of his bath routine. Thus, we are doing a gotee and he is fine with that as long as he gets to shave and wear Brut. Here is a picture of our start:

Thursday, June 07, 2007

I haven’t posted for a while because my readers know me so well and take some of my worries about Billy Ray too seriously for their own kids. I like to be sure about my facts before sharing our struggles. Apparently, I am not going to have that luxury. We are in a struggle to verify Billy Ray’s situation in order to get him appropriate medical care.

Some kids seem to get every potentially bad reaction from medications or their genes. If there is even a .2 percent chance that you will get one condition if you have another one, you might as well plan for it with some children and adults. My son is apparently one of those. Trying to be positive about my infertility, I remember thinking that at least my adopted child would not have to inherit genes from our families that included epilepsy, diabetes, high blood pressure, migraines, and even mental illness. Apparently that was a misplaced hope given all the genetic things we are finding about Billy Ray.

As stated here sometimes Moms (and Dads) just know that there is something wrong even before it is confirmed. I have email to medical providers going back a long time where I said he is better but I still fear there is something we have not found yet. We have dealt with pancreatitis, diabetes that didn’t seem to be effected by diet one way or the other, repeated sinus and ear infections, etc., etc.

In September, he had surgery (the Nissen procedure) for severe acid reflex and seemed to be getting his strength back pretty well. The choking and the breathing issues seemed to improve right after surgery. He started gaining weight, which, at first, seemed like a good thing.

Then all winter it was one sinus infection after another and major bowel issues. Somewhere along the line, I realized he had more thick mucus in his nose and throat even when he didn’t have an infection. He would walk around the room and gag or cough similar to how he did with acid reflex while he was eating but this time no eating or drinking was involved.

I noticed that he was starting to sweat a little, which he had never done even though he tends to wear far too many clothes in hot weather. His energy level dropped rapidly at times. Whereas he used to never stop unless he was extremely ill, he seems to have sprints of energy on occasion but lots of times he seems to have no energy.

One day, I called Kate Crowe, genetic counselor, who wrote the foreword to Parenting Your Complex Child. I had called only to tell her that my book was finalist in the 2007 Nautilus Book Awards. She is such a busy lady I usually expect to leave a message. She was there and had a couple of minutes between patients. At the end of our conversation, she asked about Billy Ray and I shared a bit of what was happening. All of a sudden, she told me to hold on and she looked on Kaiser’s computer (Billy Ray had been seen at Kaiser since adoptive placement at 14 months old until we moved here when he was 22 years old). When she came on the phone she said that they had never been screened him for Cystic Fibrosis. Many of the symptoms he is now experiencing didn’t occur until after our move so didn’t trigger Kaiser to screen.

There is more being learned about a possible connection with Down syndrome and Cystic Fibrosis than in the past. I had never heard of that connection before but when I did a Google search for Down syndrome and CF it came back with over a million results. There was an article documenting the connection in the sixties. I don’t think it is that common but apparently it is not new.

So here we go again. His energy level has changed so we have to redo his schedule for things are flexible in terms of time frame and in terms of energy requirement. The one exception is he still goes for his Meals on Wheels delivery most weeks. He is exhausted afterwards but it is important to him to do it.

I will try to keep up more with this blog as we kind of get caught up with his schedule.